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msfocusmagazine.org
Before MS, I was exhaustingly productive.
I took on projects, hosted holidays, planned
social events for my kids, and worked 12-hour
days in an office. I was a natural extrovert,
and there weren’t enough hours in the day to
accomplish all my plans. Multiple sclerosis
changed all of that for me. My cerebral lesions
specifically affected my ability to function as
an attorney, and my fatigue turned me into
an introvert who was out of energy by 9 a.m.
In just a few months, I lost many of the
things that held value for me – bedtime stories
with my kids, professional accomplishments,
being reliable, and having energy without
having to take a pill. I withdrew from my law
firm, my PTO position, and my friends. Things
were dark. However, I did continue one thing
– my neighborhood summer camp.
The summer before my MS diagnosis, a few
neighbors and I created a half-day, 20-kid
summer camp called RPK Camp. As working
parents, we scheduled RPK Camp for transition
week (the week after school ends, but traditional
camps haven’t yet started), so we could have
some childcare while we attempted to work
from home. It was a huge success – parents got
work done, kids had fun, and neighbors
became friends. I was committed to doing it
again, but I wasn’t sure how I could. My neigh
bors were flexible, and we were able to
accommodate all my MS needs (morning only
– not too hot; only three hours – not too tired; my
husband – taking a week off of work to support
me).
Organizing RPK Camp helped me realize
I was still capable within the limitations of my
disease. It also helped my neighborhood
recognize that everyone has value, even if
they may need accommodations to participate.
MS had left me professionally sidelined and
too unreliable for steady volunteer work, but
I was still able to contribute to my community.
Each year, I enjoyed planning playful summer
activities focusing on those experiences kids
should have before they grow up – blowing
gigantic bubbles, playing hide-n-go-seek,
making a giant “mushroom” with a parachute.
But I also focused on making those memorable
activities inclusive for the kids I knew would
be coming to camp. If a child was on the
autism spectrum, allergic to nuts, selectively
mute, obsessed with princesses, or misbehaving,
we would adjust camp to make it work for
them. Unlike other summer experiences,
which lasted a week or two, our neighborhood
was there to support kids for the long-haul.
We recognized every child goes through
delightful and challenging phases, and we
welcomed them all with open arms.
Although my health fluctuated, RPK Camp
Life with MS
Saving my Energy for Summer Camp
Saving my Energy for Summer Camp
by Victoria Ippolito
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